Entries from March 8, 2020 - March 14, 2020
self-isolation
given that i had basically spent the previous twenty-four hours in bed and/or sleeping, i was uncharacteristically, but not surprisingly, up and awake before 9am on saturday. have you ever tried to get yourself out of bed using zero percent of one half of your upper body? i hadn't either. andy helped me up and out of bed, and then it was time for the morning drainage routine. each drain grenade has a plastic flap attached, and a safety pin runs through it to attach it to my surgical bra, which as you can imagine, is all tremendously attractive. andy's new morning and evening routine consists of unattaching drain #1 from the bra; opening the stopper of the drain; emptying the contents of the plastic drain by squeezing it, releasing the weird blood and lymphatic fluid into a measuring cup; plugging the stopper of the drain while keeping it squeezed (thus providing suction to make the drain work); milking whatever is left in the tubing and forcing the contents down into the drain; reattaching the drain to the bra; then rinse and repeat for drain #2. then he records the amount of fluid from each drain onto separate sheets of paper. good times.
later in the morning, katie stopped by and delivered a slow cooker full of chicken soup, as well as some ready-for-slow-cooking bags of frozen recipes for future meals. we visit for awhile, and then she is on her way to visit family. i take up residence on the couch, gingerly elevating my arm on pillows as we navigate day #1 at home, with the smell of chicken soup in the background. shortly before noon, andy's sister emily came by, as she happened to be in the area that morning. she was happily surprised at how well i was doing, and noted that her nursing skills did not seem necessary during her visit. after emily departed, we had lunch, and i took the opportunity to sit on the couch in front of the tv, watching all of my ridiculous youtube channels for basically the entire afternoon. it was mindless and glorious, and also required very little movement. later on we took a very short walk, for which i am sure i looked fairly disheveled, but it was good to be moving around outside. the evening consisted of us watching several episodes of arrested development.
that was the first full day out of the hospital. most of my time spent at home has been samey samey -- every day is saturday! i am sure specific things have happened, but do you really care WHICH board game we played on sunday (great western trail) as opposed to wednesday (orleans)? probably not. generally speaking, i have been getting plenty of rest, waking up late (10:30am rise and shine? yes, please), trying to do gentle beginner exercises with my left arm as instructed, taking short walks, and spending lots of time on the couch with the tv or my laptop. andy has been puttering around the house doing his own things as well, helping me with weird things i can't do on my own (getting certain dishes down from the cabinet, putting on shirts, preparing meals, doing laundry and dishes).
showering is now a whole elaborate experience which also requires assistance. i was told i could take a shower 24-48 hours after surgery, but not allow the drain sites to get wet, and also, not to allow direct shower spray onto the drain and incision sites. besides being confusing, this did not sound like much of a shower to me, so i don't think that happened until wednesday. it involved my trusty press and seal, tape, lots of maneuvering, and plenty of help from andy. even so, it's going to be awhile until my left armpit gets some deep cleaning, so, sorry to anyone approaching me from that side!
some particular moments from particular days... after looking at the weather forecast early in the week, it seemed like monday was going to be gorgeous, and the next few days not so much. so after andy ran some errands and did some yard work, we headed out to stauf's, a coffeehouse in grandview. there was a severe shortage of tables outside, but we found a bench, got ourselves caffeinated, and enjoyed the weather and the people watching. as someone who has always been an 8-to-5 employee, i am always perplexed at the amount of people out and about at, say, 2pm on a random weekday. what do you do? how is this possible? i don't understand.
sometime during the afternoon on tuesday, i got a call from the dr. h with an update. she said the pathology came back with good news: the tumor at the time of surgery was 3cm (which is still large for a tumor in general, but much smaller than my original size of 9cm!), so the chemotherapy had definitely done its job in shrinking the tumor. she said that the margins were clear, which means that it appears they did not leave any of that tumor behind. she also said that they ended up removing six axillary lymph nodes, and only two tested positive for any cancer -- only two tested positive during the biopsies in august, so it appears there was no spread. from what i can tell, it seems unlikely that i will need more chemo, but likely that i will receive radiation (it seems like that has always been the plan for me). however, the whole phone call lasted perhaps one minute, so i will get more details next week on any other information regarding pathology and/or future steps from both doctors.
on wednesday, andy's mom sent a meal of lasagna, garlic bread, and salad, delivered by his sister, sarah. his mom stayed behind on account of possibly? maybe? starting to come down with something? even though it was probably nothing. but you never know, because CORONAVIRUS 2020. anyway, we all had a nice lunch and sarah hung out for the afternoon, which was lovely.
thursday was relatively exciting, for it marked two days in a row in which each of my grenades drained 30ml or less of fluid. i called the doctor's office and we were scheduled to come in at 2:30pm to have the drains removed that day. it was a very strange experience. it didn't hurt, exactly, but the feeling of having two tubes pulled out of your body (about six inches worth, on the inside) is not one i would necessarily like to reminisce about. not painful, but super weird, sort of giving my stomach the flippy-floppies. i felt much less mutant-like with the tubing and grenades no longer hanging out of my body.
i noted earlier that coronavirus is currently taking over the world. i find it convenient that my surgery and recovery time has forced us into accidental self-isolation just as everyone loses their minds over toilet paper. however, we were interested in what it really looked like Out In The Real World, so friday evening we ventured out on an anthropological excursion to kroger. we decided beforehand that if the lines were crazy, we would just walk around, take it all in, and gawk. as it turned out, not a whole lot of activity on a friday night, so we picked up a few things like normal people. among the things that people in grandview reduced to empty or almost empty shelves: broccoli, bananas, apples (aside from granny smith, which amuses me), bread (aside from gluten-free loaves and a variety of buns), milk, eggs, pasta, pasta sauce, frozen vegetables, toilet paper (obvs). it was interesting to say the least. but we got some fresh fruits and veggies, along with other usual items. to be honest, i am at the point where i could have used more toilet paper, but we've got enough to manage.
today has been pretty chill. i didn't wake up until 11am(!), had some coffee, and decided it was time for a shower for the first time without the drains. still an adventure, mostly involving one of the old drain entries not quite getting scabbed over, so that was gross, but we made it happen. i also managed to put on a non-button-front, but very stretchy t-shirt, so, progress? since then it has been lunch and watching the large, fluffy snowflakes fall outside. andy has been busy running the dishwasher, doing laundry, and washing pots and pans. the washer recently ended its cycle and notified us with persistent beeping, while andy was in the middle of other kitchen cleaning activities, leading him to exclaim, "i'm only one man!" (spoiler alert: this also happened when the dryer began beeping).
all activities in the outside world seem to have been cancelled, and i have to say we're pretty prepared to do not much of anything, given our past week or so. i am still healing, so still doing a lot of resting. i am still not supposed to be doing any lifting or pushing or pulling with my left arm, but otherwise trying to resume normal activities and doing light exercises for it at home. i'm sort of numb and sore, but not in any pain, really. i meet with the surgeon on wednesday and the medical oncologist on thursday... i imagine there will soon be a radiation oncologist in my future. so far, things seem to be going according to plan for Week 29 (not the life plan i envisioned, but the plan in place since august, anyway). let's do this.
changes
ah, Week 28... where to begin? it started off pretty chill: board games at giant eagle on monday night, shopping for post-surgery clothing on tuesday night (note: i now own not one, but TWO pairs of sweatpants, which will make certain folks out there happy and/or amused). wednesday was my last pre-surgery evening, so andy and i went out for a nice dinner, then came home and played a long-ish game (terra mystica), until about midnight. this was perfect for keeping my mind occupied and not dwelling on what was happening the next day. as we were playing, i had a breakfast casserole baking in the oven. if you're thinking, well, this seems like a weird time to have breakfast casserole, you would be right! but i had been informed that my arrival time at the hospital was scheduled for 1:15pm, and i was allowed to eat solid foods up until 5am. so, of course, i planned to wake my ass up at 4:30am and shove food into my face to avoid getting too hangry by the time surgery rolled around. this.. this is what normal people do, right?
i indeed woke up before 5am on thursday, consumed some eggy, sausage-y goodness, and promptly went back to sleep. i eventually got up around 9:30am? i talked with andy about mourning the loss of hillary and all of the emotions that entails. then i sort of wandered around, getting some last minute things around to pack (spoiler alert: i used approximately 3% of all the stuff i packed). i had a small amount of black coffee and lots of gatorade (both allowed/recommended up until 11:15am). then it was a repeat of my shower the night before, using the remaining portion of the antiseptic liquid soap i had been given, in order to scrub up for surgery. i used way more than necessary for both showers and still had plenty left in the bottle, so if anyone ever needs that Fresh Hospital Smell, let me know... i'll hook you up. soon after this, it was time to pack up the car and head downtown.
just a random thursday afternoon... traffic was minimal. not random for me, of course. we arrived at grant around 1pm, the valet whisked our car away, and we headed to the surgery check-in desk. he confirms my name and date of birth, and adds my entourage to his list. "andy.. husband.. blue jacket.. button down.. white stripes." anyone else? yes, paul and serena, friends. then we wandered around looking for the perfect place to sit, which didn't last long for me, as my name was called shortly after. it was probably just shy of 1:10pm at that point, so we were hopeful that perhaps the day's events would move along quickly. (spoiler alert: they most certainly did not.) i left my bag with andy just as paul was arriving. i greeted paul with a quick hug, then left them both as i got escorted to pre-op, located upstairs. the nurse (or volunteer, not sure) innocently asked, "oh, was that your dad?" "no, but he is going to LOVE that you asked that!" and i, of course, texted this to andy, paul, and serena as quickly as i could. i was handed off to another nurse, with the usual tasks: height, weight, reason for being here?, pee in a cup. then i was shown to Bay 9 and had more usual tasks with another nurse: name, date of birth, blood pressure, pulse, oxygen levels, reason for being here? did you shower with surgical soap this morning? then i was left to change into a hospital gown and non-skid socks, put everything i was wearing into plastic bags, take my place on the gurney, and wait for.. everything. one of the first characters to show up was a very young guy in charge of starting my iv, as it seems ports are not typically used during surgery. i have never had trouble getting an iv or blood work started. SPOILER ALERT: HE HAD SOME TROUBLE. first of all, it was in a weird spot along my lower thumb, which i noted as odd. it hurt when he tried to start it and oh, did it hurt when he started DIGGING AROUND IN THERE. i'm starting to see stars, he seems to be wrapping things up, i look over, and there is no cannula in my vein. "all that and it's not even IN?" he was very apologetic, but i was very much in pain and perhaps a little bit cranky about it. "would you like me to give you a minute before trying again?" "YESSSSS," i hissed through clenched teeth. he quietly packed up his things and left. within a couple of minutes, a new, different nurse came in. "couldn't get the iv, huh?" she said as she unwrapped an alcohol swab, and swiped DIRECTLY over the spot with MUCH PRESSURE SUCH PAIN and i do believe through the new stars i whisper-screamed "jesus, FUCK!!" which clearly startled the nurse. "oooh, he really dug around in there. i'm sorry." thankfully, she got it in quickly, no digging, and i was thankful that my blood pressure and pulse were already recorded because i was damn near through the roof at that point.
generally speaking, it is a parade of different nurses and medical personnel during pre-op. around 2pm, a nurse called down to the waiting area so that i could have some company with people who were NOT wearing scrubs. about ten minutes later, andy showed up. "no offense, but only you?" "they only told me i could come up." i had told the nurse differently; we got it all figured out, and eventually paul and serena joined the pre-op party in Bay 9. i had been told at that point that surgery was scheduled for 3:30pm. given my arrival time, obviously my surgery had already been bumped, but hey. more time with friends and family, i guess? (spoiler alert: we had the pleasure of each other's company in Bay 9 until almost 5pm.) an anesthesiologist turned up at some point, asking the usual anesthesiologist questions: do you have sleep apnea? any loose teeth? issues with anesthesia? i let him know of my usual need of more lidocaine and usual sensitivity to nausea. he was very soft spoken and i almost thought he was currently under the influence of anesthetics. some time after that, dr. h stopped by with the usual surgical questions. "and what procedure are you having today?" "well, i believe we are saying goodbye to hillary today." she laughed and said, "oh, you must not be a hillary fan." i insisted no, no, it's not that, she just happens to be on the left. i gestured to my right breast, informing her it was condoleeza. she laughed again, and i imagine she just thinks i'm nuts. the parade of personnel kept changing, as we were there so long that staff were starting and stopping their shifts. we even got anesthesiologist #2, who seemed more alert than the last one, but had a habit of not finishing his sentences. he also relayed airline safety procedures that the medical community had incorporated into their procedures? i guess? oh, also, shortly before #2 came in, i had gotten a serving of pre-op drugs. when he asked if there was anything he could do for me, i said "HOW ABOUT GETTING ME IN TO SURGERY?" now, in my mind, it was light and joking, but judging by the reactions of everyone in the room, and also being informed by andy later, my tone was... more than a little cranky. i truly blame the drugs. finally, some operating room nurses showed up, put a hairnet on me (ha!), and i knew this was it. i said goodbye to everyone and got wheeled into the OR. when i had surgery for my port, i remembered one bright light, oxygen mask, and then i was out. this time i remember several nurses being there, getting slid onto an operating table, laying around for a little bit, then finally the oxygen mask and... out.
i was in surgery from 5pm to 7pm. i faintly remember knowing i was in a post-op surgery bay from the nurse-y sounds around me. i don't think i ever opened my eyes there. i do, however, definitely remember coming to for bit, sitting up, and trying to alert nurses by repeating "sick, sick, sick, sick..." and quickly releasing the contents of my stomach several times before they were able to shove a vomit bag into my right hand, though most of the damage was done. i assume this was all over a hospital blanket, since i seemed to be in the same clean gown as earlier. maybe not, i don't know. this is all i remember from post-op surgery recovery.
around 9pm, i was wheeled from the surgical center to the main hospital, room 908. i recall lots of bumps and elevators along the way. i recall being told it was 9pm and feeling badly that everyone had to wait around for so long. i recall seeing and hearing andy, and nurses and assistants introducing themselves. i didn't do a lot of looking, as first of all i didn't have my glasses on, and second of all, opening my eyes and looking around made me dizzy. blurry nurse blob with a beard, blurry nurse blob without a beard, okay, got it. lots of vitals getting taken. got my shins wrapped in some weird automated leg massagers to ward off blood clots, and i recall saying i looked like i was ready to play soccer. nurse without a beard offered a list of food items, of which jello was the only one that sounded good. when he came back, he apologetically informed me that they were out of jello. i was sort of sad but honestly not very hungry anyway. mostly i had andy feed me sips of water from a stryofoam cup, a majority of which i just sort of rubbed all over my parched lips, using just my lips, which i am sure was very sexy and charming. mostly i laid there with my eyes closed, as andy talked to me and updated me on what he knew. when i was in recovery, dr. h had come by and said that everything had gone to plan, some lymph nodes had been removed, tissue had been sent to pathology, two drains had been placed, overall things had gone well. he said that paul and serena had stayed with him through dr. h's update. we discussed whether or not andy should stay the night in the hospital's recliner, as it was a bit of a toss-up. (spoiler alert: i was occasionally woken up by the snores emanating from andy throughout the night... far from being distracting, it was actually quite comforting.)
i more or less slept for my entire time in the hospital, with a constant stream of nurses and assistants and vital signs and questions throughout. i was a little surprised when breakfast arrived, as it didn't seem like serving eggs and french toast at 3am made any sense. it was, of course, probably 7am or so, but i had lost all track of time. it was around this point that i started getting really annoyed at the slick 4' x 4' pad underneath me. i believe its purpose was to assist in moving me from one gurney/table/bed to another, but mostly it just made me slide down while in any upright sitting position. i managed to scoot myself up to be able to eat, but it was an ongoing battle during my stay.
maybe around 10am, stephanie, a nurse from the breast health clinic visited. she had dropped off a bag of various dressings, gauzes, and information on thursday during pre-op. she was back to demonstrate to us how to care for my incisions and drains. i have one large incision running across the left half of my chest, and a couple of inches below that, i have two long, thin, flexible tubes running out of my body. they are stitched in place to my skin on one end, and on the other end, each of them are attached to a small, plastic, vile, hand grenade: these are my drains. what do they drain, you might ask? good question. it seems to be fluids that my body is sending to the site in order to help the healing process, and those fluids range in color from red to yellow and sometimes little bits of stuff and it is pretty gross. the drains work via suction and collect in the grenades and need to be emptied and measured and when they each collect less than 30ml per day for a couple of days, then i can be scheduled to get them removed during an office visit. (for a sense of scale, the first day was 95ml and 50ml; yesterday was 35ml and 25ml).
but i am getting ahead of myself. as stephanie was beginning her duties, the morning nurse and a trainee nurse came in to check on me. there was a lot going on as the breast health nurse unzipped my bra and uncovered my incision dressings. i watched as she did so, slowly realizing that this was the first time someone had checked my incision area while i actually had my glasses on. once she has peeled away the original dressings, i am confronted with the new me, just as the other nurses ask if there is anything i need before moving on. i put my head back, close my eyes, take deep breaths, and shake my head no, because i cannot speak at this point. they leave the room, stephanie continues her motions, but i am done for the moment. the tears arrive, andy comforts me. "this is the first time she's really seen the incision." she stops and leaves the room to give us some time. shit is real, hillary is gone, my body changed. the time for mourning has arrived. it's not like losing an appendix, or removing a gall bladder, or even replacing a heart. something that is simultaneously seen and yet not seen by everyone, every day; a distinct portion of a woman's body that is, let's be honest, pretty awesome; a part of me for over forty years, no longer exists. out of my control. poof. empty.
cancer is really fucked up, man.
i cry for awhile. eventually, i pull myself together, and andy calls stephanie back into the room. sometimes blood clots and gunk get into the tubes, which obviously interferes with drainage. so to make sure fluids can move through the tubes properly, they need to be "stripped" or "milked" which is 90-95% less hot than it sounds. she shows us how to do that, gives us some instructions on dressings and gauzes, and wishes us the best. from this point on, we are just waiting for a visit from dr. h for updates and discharge status. in the meantime, it was the usual parade of staff. i had eaten only part of my breakfast (mostly the french toast and orange juice), but when lunch was dropped off, i ate almost every bite of tilapia, rice pilaf, fruit, brownie, and ginger ale, which were all pretty good. (the cream of mushroom soup was a thickly textured no-go for me). then more waiting. andy walked the halls and stairwells several times throughout the day to get some activity. a chaplain came by at some point, but my life is full of pastors, so i was all set.
finally, at around 3pm, a doctor who was not dr. h arrived, which was kind of annoying for me, because i just wanted to see dr. h and ask her some questions about the surgery. dr. h has virtually no chill, but in a good way. this doctor seemed to be all chill, and it was kind of annoying. we were told that we had prescriptions for antibiotics and norco (hydrocodone and aceteminophen) waiting for me. we explained that norco makes me nauseated, could we get something else? well, if it makes you nauseated, don't take it. um.. thanks for that brilliant problem solving, but it doesn't really help anything. if i actually thought i would NEED stronger painkillers, i would have pushed back, but given that i had been living on tylenol since yesterday evening, we dropped the argument. whatever. a wheelchair was summoned, we started gathering up all my stuff, and soon enough, Room 908 was behind us and the circus of valet parking began.
andy headed to the valet station while the nurse pushing my wheelchair started to deposit me outside. "um... yeah, i don't have my coat on, please take me back inside." andy was busy with the valets, so i sort of shoved my coat on from the front, like a smock, and a few seconds later i hear andy exclaim, "these aren't my keys!" the valet gestures to a shitty car outside and andy is like yeah... that's not my car. apparently there is a whole separate procedure for cars dropped off the day before. once we explained that, the valets located the correct keys, andy put down his mental conspiracy theory pitchfork regarding car-stealing hospital valet systems, and we loaded everything, including me, into the car, and were on our way.
it was good to arrive at home. it was sort of a blur of activity. i had basically been sleeping for the last 24 hours, so i set up shop on the couch, becoming a bit of a gravity suck of pillows, slowly but surely gathering them all around me. andy mostly unpacked everything, and i imagine i ate the breakfast casserole for dinner? or maybe mashed potatoes? it was an evening of updating and texting and messaging and calling and resting and recovering. oh, it was also an evening of confusing the pharmacist, as i told andy to fill the norco prescription, but for only five pills, as a just in caseies. andy said the pharmacist was insistent on filling it for the full 28 pills, but finally gave in to our wishes. i mean, HELLO OPIOID EPIDEMIC? i understand trying to make our lives easier by avoiding another prescription, but trust me, i barely plan on even taking one of these, let alone requesting another prescription. anyway, i caught up on some colbert while andy was out procuring medicines, and had a pretty normal bedtime, around 10pm.
probably the longest post in the history of this blog. i'm cutting this one "short" (through friday evening of Week 28), but there will be far less to write about regarding recovery week. also, i feel like i've been writing this forever. thanks for all the well wishes, prayers, and support. on the road to recovery... let's do this.